Finding out why

Finding out why

Writer’s block lifted and back to our journey! So a couple of weeks after Henry’s funeral, we were back at the hospital for the results of his post-mortem. This was not the sort of six-week check-up we had spent all those months anticipating. That morning I recall just trying to get my head around that fact – we were going to hospital to get our baby’s post-mortem results.

‘Post-mortem’ and ‘baby’ are not words designed to be found in the same sentence. This is one of those realisation moments – those moments you have along the way in this journey when you realise that this is it now, your life has changed, irrevocably, for ever. There isn’t a point where your life just ‘goes back to normal’. Even the very concept of ‘normal’ will never be the same again.

And yet, it’s important to add, life DOES go back to normal in time, it just becomes a different normal, a ‘new normal’. The entire landscape of your life has changed beyond recognition but you adjust in time to your new landscape. We talked in our support group’s monthly meeting recently about how you do adjust over time. When you first lose your child, there is a sense of “well, this is it now, life is over”. But then as the days and weeks and months go by, you have all the normal “firsts” that are a real struggle without your child – first birthdays, first Christmases.

But you also have other ‘firsts’ that you can’t see coming – things like the first time you laugh after your child dies, like really belly-laugh. And then you instantly feel guilty – questioning how you can possibly ever laugh again when you’ve buried your child. But what’s important to know – if you’re reading this at that stage of your journey of grief – is that this is all part of it. Losing a child changes your very being, beyond recognition, BUT it doesn’t mean you will be stuck in complete darkness for ever. It is true that even your happy moments will be tinged with sadness, but not that you won’t have happy moments. The journey you go through isn’t a straight line progression, and there’s no set timescale, but you will get through it – three steps forward, two steps back often – but you will survive.

Blessedly, the Harrogate Hospital maternity team have the foresight and compassion to hold meetings like post-mortem results appointments away from the normal maternity clinics, just in one of the normal clinic areas, no other mums or babies in sight. I didn’t really register it at the time, but I certainly would have registered it if they hadn’t done this. Little touches like this make the journey just that tiny bit easier – some you register at the time, some you only come to truly appreciate later on.

So, one of the clinic areas near the main entrance to the hospital – we’d return to the same clinic area in 2015, which of course we didn’t know at the time. We walked into a small consulting room to find the friendly face of Paul Smith, one of the consultants. He’s one of life’s good guys, and we were really glad to see him. There’s not really any beating about the bush in these appointments, quick set of questions about how we’re doing with sympathetic head-tilt (everyone does it – and every bereaved parent reading this is probably nodding right now), quick set of questions about how Briony’s doing physically.

And then the main event – why did our baby, why did our SON, why did Henry die?

Around 40% of stillbirth post-mortems come back without any clear cause of death. So just having one is a gamble, if you will. But we needed to know. I spoke in ‘Two days to last a lifetime’ about how we just knew, instinctively, without even talking about it, that we would take that chance. We knew, deep down, that we’d try again, so we wanted to know. Some people don’t, and I totally respect that. It’s such a personal decision, and one that no-one should ever have to make. There’s no one ‘right’ answer.

So Henry’s cause of death was Placental Insufficiency – nobody’s fault, nothing anyone could have done, just one of those things. No underlying reason, no specific cause for concern if Briony was lucky enough to get pregnant again. That was a massive relief to me. It meant that we could try again without additional fear (there’s always a LOT of fear for parents trying again after loss) – we’d already talked about it. It also meant that nobody was to blame, nothing could have been done differently.

Reassuring then, but one of the things about becoming a campaigner, advocate, charity worker – whatever name you choose – in the stillbirth world is that you come to know more about the issues surrounding baby loss than you ever thought you could know.

So I’ve learnt about risk factors for stillbirth – smoking, diabetes, BMI, age, ethnicity – and I’ve seen how the science and the understanding of stillbirth has developed, even in the last two years.

The first time I presented to maternity professionals was in March 2016, when I was privileged to be asked to tell our story at the launch of NHS England’s new stillbirth reduction initiative, the Saving Babies’ Lives Care Bundle. I’ll talk more about it (and the other presentations I’ve given since) in blogs that follow (I don’t want to jump too far ahead). There are a couple of key things that I want to mention from that day now though, in the context of Henry’s post-mortem results.

First was that one of the main things I remember from that day was when Dr. Matthew Jolly, NHS England’s National Clinical Director for Maternity Review and Women’s Health (he’s a big cheese), took to the stage after me.

He talked about a review that had been done about fifteen years before, around the turn of the century. This review had identified four key factors that needed to be focused on in order to reduce stillbirth rates:

Reducing smoking in pregnancy.

Better identification of babies that are small for gestational age.

Raised awareness about reduced fetal movements (RFM).

Better monitoring during labour.

And everyone nodded and agreed that these sounded like

Very Sensible Things That Should Definitely Be Done

and then went back to work and carried on as normal. This is a sweeping generalisation, but to all intents and purposes, nothing changed.

So here we were in a huge ballroom at the Queen’s Hotel in the centre of Leeds, fifteen years later and (after I’d made everyone cry – I soon learnt that this is my de facto role at any of these events, to make people cry so they do the things people want them to) we were being told that the Saving Babies Lives Care Bundle had identified four key factors that needed to be focused on in order to reduce stillbirth rates:

Reducing smoking in pregnancy.

Better identification of babies that are small for gestational age.

Raised awareness about reduced fetal movements (RFM).

Better monitoring during labour.

Except this time (and you could feel it in the room), there was a real conviction about making a positive change, and it’s really starting to show clear results. Everyone still agreed these were

Very Sensible Things That Should Definitely Be Done

but then went back to their trusts and actually worked on them.

The second thing that strikes me from that day going forward is this: in all the presentations I’ve ever given telling Henry’s Story, I always mention his birth weight – 4lb 13.5oz at 38 weeks. Not for any particular reason, just that I’m a bit of a stats geek really. And it’s one of those things people always ask parents of newborns, isn’t it? I can’t honestly say that people particularly ask you that if your baby’s died, but in my head people ask it of parents whose babies are alive.

When I mentioned this in Leeds in March 2016, no-one in a room full of 250 maternity professionals really batted an eyelid. Not that I could tell anyway.

When I spoke at Royal Bolton Hospital in June 2017, and I mentioned the same stat, there was an audible sharp intake of breath from the whole room. When I spoke to one of the midwives about it at the end of the afternoon, she said “well we could all tell as soon as you said his weight that he was growth restricted”.

Now, I’d come to understand that Henry was growth restricted over the previous months – not simply from understanding more about the issues; not simply from coming to know more than I ever thought I would about customised growth charts and GAP protocols; not just from sharing stages and talking for hours with the wonderful Heidi Eldridge, Aidan’s mum and CEO of the amazing safer pregnancy charity MAMA Academy; not even just from the long conversation I had with Professor Jason Gardosi, Director of the Perinatal Institute in March 2017 at an event Heidi and I spoke at in Birmingham. From a combination of all these things.

The thing that struck me in Bolton on that June afternoon was that the landscape has shifted.

Gone is the dated mindset that babies that are stillborn were ‘probably really poorly anyway’ or that ‘they most likely wouldn’t have survived’. Gone (increasingly, but not entirely) are the well-intentioned but devastating phrases such as “well it was just meant to be” or “it’s God’s will”.

Gone is the idea that stillbirth is ‘just one of those things’.

These out-of-date beliefs have been replaced by an understanding that around 60% of term (37 weeks’ gestation or later) stillbirths are preventable. These are not babies who wouldn’t survive. They are not babies who were too poorly. Many of these are babies who, if identified in time, have every chance not only of being born safely, but of a perfectly long and healthy life.

In the latter part of 2014, Harrogate Hospital started using customised growth charts. These are designed to chart the growth of each baby on an individual basis, taking into account a range of factors including maternal height and weight, ethnicity, and how many children mum has, what her previous babies’ weights were, rather than on generic charts that are the same for everyone. They allow maternity professionals to identify babies that are small for gestational age much more effectively.

Babies that are small for gestational age are at a significantly increased risk of stillbirth. Of course, many of these risk factors interlink – smokers (Briony is not one) have a higher risk of having a stillbirth, but smoking also leads to an increased risk of having a smaller baby – which is another risk factor, so they interlink. There’s fascinating new research coming out of the Tommy’s Stillbirth Research Centre at St. Mary’s Hospital in Manchester which shows that the placentas of older women degrade faster, so they are at increased risk of placental failure or placental insufficiency at an earlier gestation – 39 weeks’ gestation for women over the age of 40 gives them a placenta in a similar condition to younger mums at 42 weeks – the gestation at which women are often induced because their placentas are at risk of degrading. If your placenta starts to degrade, then your baby won’t get all the nutrients that it needs, so is likely to be smaller – so these risk factors interlink.

If you plot Briony and Henry’s scores into their growth calculator, then you discover that Henry scores at 0.4. So not only was he on the 1st centile (the smallest 1%), but in the smallest half of that smallest 1%.

When Henry died, they weren’t using this method in Harrogate. If they had been, I genuinely believe that his severe growth restriction would probably have been picked up, and very possibly acted upon, and he may very well be here today. But we can’t change that. All the science in the world won’t bring Henry back. Hindsight is 20/20 and doesn’t give you access to a time machine. But hindsight isn’t enough on its own. What’s important is that we UNDERSTAND more, because the more we learn, the more we know, the more we can prevent and the more we can protect.

The most important thing about all this science that I’ve dazzled/bored you with (delete as applicable) isn’t that our son should have survived – devastating (and important) though that is. The important thing is that the evidence is now very clear, and it disproves the age-old mindset that stillbirth is ‘just one of those things’ or that it can’t be prevented.

Stillbirth is no longer just seen as something that happens to babies that are too poorly to live. It’s no longer seen as an unavoidable tragedy for a small minority of families. And the more the science develops and the more we understand, the more we can identify and the more we can prevent. My good friend Heidi, Aidan’s mum, (as I told you above) runs an amazing charity called MAMA Academy. Aidan was stillborn at 36 weeks weighing 5lb 4oz and was also growth restricted (which shows just how small Henry was!).

Heidi now goes all over the country campaigning for safer pregnancy and raising awareness of risks. She talks in her presentations about East Lancashire NHS Foundation Trust, who audited their stillbirth certificates and found that 49% of them had been classed as “unknown cause of death” but under review they identified that only 17% should have been classed in that way. That’s a huge difference, and just re-emphasises that knowledge is power.

That doesn’t make our journey any less traumatic, nor does it alleviate the pain felt by families whose babies die – but it does make me glad that there are families out there oblivious to the fact that in previous years they’d have been walking our path with us. I’m delighted they’re not.

And so at the time, the results of this appointment offered reassurance and a sense of closure – we weren’t at fault, there’s nothing we could have done, and no reason not to try again. As time has gone on, my perspective on some of this has changed. What hasn’t changed is the comfort (hollow though it was) we felt from knowing that it wasn’t our fault. The element of feeling like you’ve lost control and wanting to regain it is something I touched on in ‘The days that followed – numbness and compassion’ when discussing planning Henry’s funeral. It applied here too – the lack of fault or way we could have avoided Henry’s death almost gave us permission to try for a little brother or sister for him.

Post-mortems (for families that choose to have one – and there’s no right or wrong answer, opting not to have one is a challenge in its own right) are another one of those hurdles for parents to get through on this journey. We’d got through it, we were still standing, still swimming, and we could look forward to some extent – that’s a lifetime’s worth of bad luck for anyone – perhaps even look forward to another baby, or at least another pregnancy. Just keep swimming. Onwards and upwards.

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One thought on “Finding out why”

Really interesting blog Chris and so many good points. When we had our post mortem results we had to go to the state maternity hospital and walk past a load of heavily pregnant women smoking outside the entrance. It was very hard to take. We were originally told that there was no cause of death and that it was an “act of God” by our obstetrician. I HATE this apathy that so many health practioners ​seem to have about stillbirth. By saying it is an “act of God” we are accepting that nothing can be done about it and that it is ok. I refuse to accept that it is ok for any baby to die. We must continue to fight and reduce stillbirth rates. Education, as always, is the key.

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This is how I let a most unforunate loss affect me, but not negatively. I made a choice to pay attention to the signs and understand why they were there. This is my perspective of a series of ironic events that changed me, and gave me knowledge.